Bladder pain, extinguishing flare?

[Vixen9368]

Hello community,

I have experienced severe and unrelenting bladder pain as my TMS symptom on and off for many years. I was told I have "Interstitial cystitis" and every single medical treatment failed, or just made my pain worse, so I turned to the TMS approach to healing my pain.
I began to treat it as TMS a year ago, using curable, daily meditation, private PRT therapy with a specialist (once weekly), and learning mindfulness techniques. My brain was a dumpster fire when I began this recovery process. I could barely do anything other than my job and be at home.
My brain has changed a lot, and I am able to do a lot more things now. I got to a place a month or two ago where I was almost pain free, but in the past week may be experiencing one of those "extinguishing flares" which seems to have been triggered by trying to take Buproprion again.
Despite my continued approaches which have worked for me previously, I am not able to recover from the pain from this flare even though I feel quite calm about it relative to where I started. It essentially makes me think this process is kind of B.S., or wondering if there is something else I can do?

Curious as to your thoughts. Thanks.

 

[Rabscuttle]

The process isn’t B.S, you just have a ton of expectations and likely pressure on yourself to recover quickly. That’s usually the reason people believe in things like extinguishing flares/extinction bursts, they want to believe that since they’re going through severe pain now once it’s over they’re free. This isn’t a physical injury, it’s not severe pain, moderate pain, low pain, gone for good. It’s ups and downs.

the concept of extinguishing bursts has no basis in this work, I’ve never seen any reasonable justification for it.

you say you’re seeing progress, then continue on your course, stop judging your progress by your pain on short time scales. Pressure and expectations are not friends to the TMS brain.

 

[GhostlyMarie]

If you suspect your brain is trying to scare you back into having fear around your symptoms, why would you let it? You got this. You’ve made excellent progress. To the point that you’re in a big flare and you *know* it’s an extinction burst. Don’t give up now, this is a good sign in healing! Just keep doing your mind body work and don’t let the fear back in. You can do hard things. This journey isn’t linear and you are destined to succeed.

 

[Adam Coloretti (coach)]

I was told I have "Interstitial cystitis" and every single medical treatment failed, or just made my pain worse, so I turned to the TMS approach to healing my pain.

Hi!

In the absence of infection, IC is often just an umbrella term for symptoms when the doctors have no idea, and is almost always TMS. You can tell me if I've made a wrong assumption (as I'm just testing for issues), but you talk of the TMS approach as if it's another tactic or process to heal from chronic pain. TMS is the syndrome itself, you either have it or you don't (so it's not really a choice as to whether to apply it or not to see if it works - there is no other option if you have TMS). Do you believe you have TMS or do you still believe there's a structural issue?

I got to a place a month or two ago where I was almost pain free, but in the past week may be experiencing one of those "extinguishing flares" which seems to have been triggered by trying to take Buproprion again.

That's huge progress! It may have been triggered by the medication, but have you reflected on what else has been going on emotionally in the last week? That's usually where chronic symptoms lie. It may be the medication and I'm not an expert on its side effects, but you should be able to ascertain if that is what is causing it - it might also be a false flag. I'll note too that it sounds as if you may be conflating TMS with medication side effects - they aren't the same thing. An extinction burst (if they exist, Rabscuttle is right to have doubts) would not necessarily be triggered by the medication in the traditional sense - this really depends on your understanding of TMS concepts.

Despite my continued approaches which have worked for me previously, I am not able to recover from the pain from this flare even though I feel quite calm about it relative to where I started. It essentially makes me think this process is kind of B.S., or wondering if there is something else I can do?

If all you changed to improve as much as you did was your mindset, then how can it be BS? If you had a structural issue, it wouldn't abate simply because your fear levels reduced. Sounds like TMS to me

 

[Joulegirl]

I was diagnosed with IC among many other symptoms. It's TMS if there is no infection. My doctor wanted to do a scope to look for reasons why I was pain, but I stopped seeing him and didn't do it. The pain eventually just went away and then when I learned about TMS it all made sense why I had IC with other symptoms. It sounds like you are in panic mode because of the flare from your post. Definitely follow the advice on this post cause it's really good! I didn't have much to add to it, just that I was diagnosed as well and it's gone now. There is hope for you too.

 

[Adam Coloretti (coach)]

I was diagnosed with IC among many other symptoms. It's TMS if there is no infection. My doctor wanted to do a scope to look for reasons why I was pain, but I stopped seeing him and didn't do it. The pain eventually just went away and then when I learned about TMS it all made sense why I had IC with other symptoms. It sounds like you are in panic mode because of the flare from your post. Definitely follow the advice on this post cause it's really good! I didn't have much to add to it, just that I was diagnosed as well and it's gone now. There is hope for you too.

@Joulegirl you say that you didn't have much to add but a success story with that diagnosis is the ultimate trump card. I'll definitely be referencing your post to those I come across who feel stuck with the label

 

[Vixen9368]

Hi everyone, thank you so much for your thoughtful replies. They have provided a lot of food for thought and helped me reframe the way I am feeling.

 

[Scott G]

...but have you reflected on what else has been going on emotionally in the last week?

Adam, that's a great line of thinking right there, and exactly what I thought of when I first read the post!

Vixen9368, if you're taking Wellbutrin again (I'm assuming for depression? Sorry if I'm wrong!) perhaps those thoughts/feelings you've been having were of concern to your brain? ....which then decided "Hey! I see you're in some distress here! How about some of that nice bladder pain to take your mind off of things for a bit!?"

I've battling generalized anxiety disorder since January; in addition to TMS (lumbar back pain). My pain has not yet left me to the extent yours had, but it's certainly subsided these last months. When I had a spike in my anxiety after upping my Lexapro dose a few weeks ago (side effect), I suddenly had some nasty back flares that soon followed. In fact, any time in the last 2 months that my anxiety got just a bit out of control, my TMS would kick-in a little harder than normal. It still happens, and I'm learning how to adapt.

Just a thought...!

 

[Vixen9368]

Adam, that's a great line of thinking right there, and exactly what I thought of when I first read the post!

Vixen9368, if you're taking Wellbutrin again (I'm assuming for depression? Sorry if I'm wrong!) perhaps those thoughts/feelings you've been having were of concern to your brain? ....which then decided "Hey! I see you're in some distress here! How about some of that nice bladder pain to take your mind off of things for a bit!?"

I've battling generalized anxiety disorder since January; in addition to TMS (lumbar back pain). My pain has not yet left me to the extent yours had, but it's certainly subsided these last months. When I had a spike in my anxiety after upping my Lexapro dose a few weeks ago (side effect), I suddenly had some nasty back flares that soon followed. In fact, any time in the last 2 months that my anxiety got just a bit out of control, my TMS would kick-in a little harder than normal. It still happens, and I'm learning how to adapt.

Just a thought...!

Yeah it's weird... I was on Wellbutrin for a while for depression, I don't feel depressed anymore, so I was hoping I could go back on it for my ADHD. For some reason my brain attributed "flares" to it before, I thought maybe it's interfering with some process in my brain that makes me feel heightened pain. But I really have no idea.